Grief

Post Grief

/ Maria Thomas / Leave a comment
Maria - daughter, brown woman with blonde highlights in hair leaning her head on dad's right shoulder. Dad is a brown man in his 80s with a cream shirt on with brown collars.

Autumn has truly arrived with nature transitioning from light to dark, the warm breath of the breeze on our skins, the beautiful red and yellow leaves strewn on the pavements reminding me of the cycle of decay and death. I am reminded of this time last year and not knowing how long I would have with dad. I remember bringing a red leaf and giving it to him, an internal sign, a moment of how I would not see him through another winter.
This pre-winter grief has lasted for years in different stages, and over seasons and cycles. My heart is heavy with loss and I know I am not the only person who is grieving and has lost this year. So many friends have lost a loved one, so many have reached out to empathise, to remember and for those who are going through it anew. I am lost for words. They are recycled and I wish I could offer new ones.
I am still going through the following and I know its because, I could not process these at the time.

Guilt

No one tells you that once all the services that were in place for your dad stops, there is no service that continues for you bar one, therapy which I pay for. Whom do you turn to when society and its structures are set up for you to deal with grief in two weeks when I have been dealing with it for eight years.
I rang Admiral Nurses after dad died to say thank you, and had a lovely conversation on the phone to a nurse but I felt guilty that I was taking up someone else’s space.
Guilt never ends, it seeps through at different moments as the memories come and go over time. All the arguments I ever had, pre and post knowing the diagnosis of dementia. All the times I never stayed with dad, as I worked long hours, or made up for working late due to being in hospital, the guilt of not working enough, of not being there for others, of not being there for myself or my husband. Guilt of what I should have done, or should have said in defence, of not being strong enough or standing up for myself enough.
Guilt is an ugly voice, it’s the internal voice of shame, it’s sharp edges prods and pokes you into self-loathing and insecurity. Guilt stops you from sleeping at night, it is a constant replay over moments, and scenarios, and ‘what ifs’. Where do I feel it, in my stomach, chocking my throat, destabilising my senses and critically analysing my words. I am shockingly drained and tired from the constant voices of guilt holding my ever faithful friend – Shame.

Shame

The voice of others or myself – although this is unique to everyone, I am sure. Shame talks to you about duty, dutiful daughter, you are the carer, what you should do because you are his and now it’s your time to give back. Shame comes from the conversations, both from people who know you and who don’t know you, from family, friends and from services. No one really believes they are shaming you because shame shows up as advice, as words of consolation and experience. I put shame in a box, i compartmentalised it until I was ready to face it, and yes that small ‘i’ is because i feel small.
Where do I feel shame in my body? In my shoulders, neck, lower back. It’s the weight I carry, not only of myself but of others and their expectations of me, of what is expected as a daughter as a carer. I never really understood what care meant in relation to gender and I now look back and realise how society’s expectations on me drained me of me.
Shame made me angry, it fires up the rage in me, it made me tough and resilient, distant, cold, numb when I shouldn’t, couldn’t, want to be those parts of me that rob me of my humanity, my joy. It wasn’t until a ‘dementia navigator’ asked me how I was and vulnerability showed itself. I cried, no I sobbed. No one had asked me how i was doing. I hadn’t asked me how i was doing in a long time, because gradually there was no i. Shame and guilt make you feel selfish for even thinking about you. It uncovers vulnerability.
My body has never been the same these last eight years, it’s older, slower, bigger, bulgier and I look different. My body, my face has reflected the tiredness, the weight, the heaviness of shame. Shame has shaped, manipulated, whispered dark thoughts in my soul, which has echoed through my body. If I could give my therapist an award, I would. The space for my shame to sit in, is there, contemplative and contained.

Vulnerability

Vulnerability has shaken my core but I had to control being vulnerable outside, to the world of healthcare professionals, whilst internally or at home I was and still am a vulnerable mess. I had wrapped vulnerability in cast iron, seriousness, arming myself with knowledge and questions, and protecting my dad with a fierceness that I hadn’t with my mum. How could I be vulnerable in any situation with social services, GPs, oncologists, hospitals, NHS services – all of the appointments and conversations were about knowing about dad’s health. I had to be strong, be in control, look the part of the dutiful daughter, not the angry, brown woman raging inside at losing my dad. Having to deal with all of the changes, the subtle ones and the slap you in the face obvious ones. I had to stay calm and bite my tongue at every turn when I was faced with ego, condescending tones, when services were not given freely to me, when I was made to ask and ask again. When I had to tell a number of different doctors, nurses what the situation was over and over, pleading for care to be in place, a service to be given. Vulnerability has made me sensitive. Sensitive to energy around me, peoples energy/vibe. Where do I feel it in my body, in my gut. Vulnerability has stoked the fire in me, anger and rage.

Rage and pain

This last year I have raged inside, my patience is a thin veil of ‘fuck off and leave me alone’ – alone is how I feel. Is it a feeling? Yes, but its more than that, it’s physical. It’s – I want to punch and kick a bag until I drop, it’s rain on my face along with my tears, it’s being on the bus and passing the care home with tears streaming down my face. It’s sitting alone in my living room and looking at the images of my dad and mum and knowing I can no longer call them or see them or go round to theirs for dinner. Rage is hot, cold, light, dark, being alone or surrounded by people. It is everything all at once. It is the eight months of trying to get home care from social services, it’s the carers who didn’t think outside the box, it’s the doctors who made the decision to prescribe an anti-psychotic instead of calling me to be with dad, it’s the matron who won’t listen, who dismisses and you are silenced and waves you away. It’s the doctors who won’t take your side when they see injustice and let you stand alone, it’s the doctor who tells you there’s nothing more they can do and leaves you with no hope. It’s the doctor who has made up their mind about what treatment will start without consultation and questions your research. It’s the services that ask why can’t you bring your dad to this activity when they already know you work full-time and offer no other solutions. It’s the people around who bring sweet food knowing his mood will be accelerated but they don’t have to deal with the aftermath of shouting, throwing food around and horrible words. It’s the punchbag you have had to be and accept because in not doing so may have been detrimental to dad. It is the smile on my face, the words when I write, the vows he didn’t hear, the wedding he didn’t see. I feel rage and hurt all at once and sits in the centre of my chest, heavy and raw every day.
It is the vitriol I feel toward me and it’s hard to talk about it, it’s hard to define it sometimes, it’s hard not to quietly walk away from everything and everyone. Even the closest do not understand because trauma is happening everywhere, to close to home, how much capacity do we have for ourselves and each other? Very little, if any at all… and on some days when it’s really quiet, I can hear it and I sit with it, hope.

Hope


Hope offers me a new life, a new vision, a different energy. It offers me a gratitude for a new life and choices that are mine to make me happy. Hope for the kindness to myself. Can I see the kindness of hope, the small steps that allow me to lift myself out of grief? Can the emptiness be filled? How can I ever be happy knowing that my parents are no longer there to see and share in my joy, in my journey of life. Was I that naive to think that they would live forever? No, but I hoped they would live to see more. I miss holding my dad’s hand and it is so raw to think today will be one year since we said goodbye. Hope is my siblings, my niece and the next generation. Is hope love? In many ways, yes and in some ways no. I hope that I will love me full and unconditionally and that might heal the memories of the past. Hope is my guide today and always.

Tides of time – heal me

Seek not my body in the past moments of joy and celebrations
Seek my soul’s divine path of forgiveness and knowing
Knowledge has held my hand and humanity has been key to its centre
Feel the words of ownership whip itself on my skin, sowing the seeds
of trauma

Patient centred care – what does that mean? Listening, giving space
To a voice otherwise marginalised, labelled, troublemaker, difficult
Advocacy for men, but what about support for women?
Regimented rules dictate a system so old, so cold sometimes, so distant
Distrusting state and healthcare that cares not for some and only others

Others that are not ‘othered’ but those elite, wealthier clients,
Friends, close knit communities, side stepping those who need care,
depend on care, medicine, welfare of those systems apparently,
in place to care, to share, to save lives and make people better.

In sickness and health do state do us part.

Grief – What does it look like?

/ Maria Thomas / Leave a comment

It’s four weeks today since dad left us and how does the world look? Lonely, hollow, in a daze. People are talking and I’ve zoned out, or I’m exhausted or I’ve forgotten what they have said. Currently, silence is my friend. Coming home after work has been difficult as some days I would usually go straight to see dad. I realise how much I am holding in and I cry when I get home or on the way home.

It’s hard to be honest at work as to why you want to leave work, to go and speak to your therapist but there’s no way around explaining why you need the time, it isn’t a given. Equally I am grateful that work understand and have given me the time off. 

I’m starting to feel anger towards all sorts of things, little triggers. I feel irritated by the smallest things and at the same time I know they are small inconsequential moments. I am fighting the urge to allow myself to become irritated by people and moments and I know this is not me. I am justifying, reflecting within myself, having conversations over again within to make sure what I am thinking is actually from a genuine place or from somewhere else.

I told my therapist recently I understand the light and the dark can exist all at once and that’s okay. Probably the biggest take home from her since I started having therapy. The light and the dark feels deeply vast and expanse. Although the darkness is more attractive and can feel comfortable as I have been there growing up and through moments of my life.

I am getting married next year and I had two scenarios in my head, either see my dad before I got married or see him the day before.  I honestly thought he would be with me beyond 90 year which he would have been in April. How could I have been in denial for months. I weep and sigh, I thought I had more time. In reality I had the best of times I could have had under the circumstances. 

One of my closest friends spoke to me the other day, she was the one person who checked in on my mum when she was admitted to hospital on various occasions and when she had lung cancer. She said “you have all this time to adjust to, you spent years looking after your dad”. I don’t think that has completely sunk in yet.

I think of all the things my parents didn’t get a chance to see but I remember all the things they experienced with me during their lifetime. There was something about wanting to be the first person to obtain a degree, the first person to get married in a western way. I wanted to make my parents proud and I know when growing up, nothing felt like it was good enough for my dad. As an adult and a reflective person, I know my parents came from their own lack of “enoughness” from their own parents and their own belief of what they hoped to achieve in life. I was a “people pleaser” for my parents as I wanted them to be pleased and happy with my achievements. There were many rebellious moments where I couldn’t give a f@@k and my parents didn’t speak to me. Ahh those teenage years but you have to go through them in order to understand or try to.

Poem
Hold my hand and tell me that one day I will see you again
Not on the shores of the sea, in the cold and grey
Not in the darkness and seeking the light
But on a bench where we sat talking, laughing, walking together

We listened to the birds, we watch the squirrels ferrying for nuts, the sky held a calm
We smelled the rosemary and the mint together, we held the apples from the garden
We sat on the bench and enjoyed summer days
I miss the stillness, to be or not to be moments, the smiles, the pain, the loss

I hear your voice still, I hear your laughter in my heart, I see your struggles
They were not nice, they were angry, fearful, lost in a world of non-sense
A world where we know this sense, this hollowness, this part of you or me
That dissolves into nothingness

The tension in my stomach has not left, the silence of my phone disturbs me
I miss your voice calling me, I know you’re with me. 
Dad – I cannot do this again, the caring, the arguing, the understanding, the loss 
at every stage. I cannot find the patience, the empathy, the many stages, the hurt,
the grief.

I ache, I hurt.

In Search of Myself

/ Maria Thomas / Leave a comment

For a long time I’ve been trying to figure out how to stay in touch with my intuition and guidance system. I feel blessed to meet people who want to talk about their own spirituality and will share what gifts they hold. Sometimes, I feel so vulnerable and such an open book even if I don’t share much. I can feel that I am being read, or at least I feel like I am. Notice the difference between the feeling of being “read” and the feeling of being “judged”. I used to feel judged but that was/is my own trigger that has been brought to the forefront of my own fears.

I am also aware there are times when I feel in sync with the universe and other times I allow myself to be consumed by the noise and be distracted by things that should not be within my framework of goals. And what exactly is my framework of goals? I still don’t know. I asked myself the other day “when did I last feel alive and one with the universe?”. It was a looooonnng time ago. There are always moments that I feel in sync but now they feel like moments of continual momentum. Not in the motion/active way but a spiritual inertia.

I am finding comfort in being able to speak about my spiritual, intuitive side as more people are discussing their own. I am always in awe of the gifts that people have to hear, feel and see clearly spirit or happenings. And living in a physical world does carry baggage of that limited, trapped mindset and how everything needs to be scientifically proved or have validity in some way. Not everything has to be scientifically proved, does it? There are many that believe in a god, can we prove this existence scientifically or is this faith of something more?

I am a curious being and like to question everything within reason, not necessarily for explanations but for perspectives. My mum delved into the world of faith-healing, fortune-telling, she read cards, palms and it fascinated me but also scared me.

At present I seeking more of an understanding of how I work, my own blocks; and to allow life to unfold by deeply trusting myself and my guidance system. “Guidance system” – what does this mean? An inner voice, a sense of timing, energy and space. Also, trusting the universe has my back. Does this sound all woo woo, maybe it is but what if it isn’t. Why do people say things like “It felt like someone walked over my grave?” or “I feel like I’m having de ja vu”.
I am so grateful for many things and at this particular crunch point it is helping me with utter grief that I feel daily.

.

My dad has lived with dementia and prostate cancer for the last 7-8 years and it has been the most difficult, traumatic time of my life. I can’t imagine what he is going through, how the neural pathways are disconnecting his memories, and closing off parts of who he was as a fully cognitive man. Am I denying death or am I seeking answers that will make it more acceptable?

I am conflicted, I am overwhelmed, I am cherishing all the moments I speak with him, hold his hand, hug him, see him smile because there are too many times the anger settles in. I feel he is in pain, physically, he is also probably angry to be losing his identity, basic functions of the things he used to know and do so well, so independently. He is losing himself in the physical world. How and why does this happen?

One of the things I recently learned about me, was that I was playing the victim, well at least saying something in a way to evoke sympathy and to make myself feel better, to support the fact that “I’m doing a good job as a dutiful daughter” by caring for him. I know that I have lived with a lot of guilt, shame, even hatred toward myself for not being a better daughter or a better person, for arguing with him before and after all of his diagnoses, for feeling angry for many unanswered questions, that his past was hidden from me, for not being able to say what I wanted to say or ask.

Along this journey for the last 8 years, I have learned to love myself more, take credit for fighting for dad and making sure he has a good quality of life, to uphold his dignity when needed and know that I made a choice to be there. No sad stories anymore but acknowledge the trying times, the hard times and no capacity times.

I hold myself through this time. I love myself along this path. I shine through even though another piece of me is dying, his memories are my memories. His loss is my loss. This last part of the journey has no words to describe. I’m still here. I’m making the best of the life I have.

I wrote the above during the week of 21st October 2024, I am now at 15 December 2024.

In the middle of all of this I joined an online event called ‘Alive’ by my friend Lois Tucker. She has since run a course called ‘Clarity’ which I knew I had to join as I was in the middle of grief.

My dad passed away on 26 November 2024, my sister and I were with him to see him leave peacefully. I was glad to be present and say goodbye in-person but it hurts and is one of the most difficult experiences to go through. I am now parentless, an “orphan” as a few described. Dad was buried on 28 November in accordance with his Muslim faith.

How am I? I’m not sure? I feel in limbo, I feel like I’ve grieved a lot already and I feel that I haven’t. I feel alright, I feel at peace knowing dad is at peace. I feel irritated, angry on occasions. I’m exhausted. I’ve gone back to work and welcome the distraction but could do with time off. I wish you could take paid leave for a month or so like maternity leave. My body has begun to untie itself and I can feel the aches and pains, I hadn’t before. I feel a slow decompression.

Everything has felt so surreal, in some ways I want to close my eyes and awake seeing my parents; having the chance to hug them again and tell them I love them. The transition from physical world to spiritual world is tough. I wanna hold my dad’s hand and tell him I love him and give him a cuddle. I want to feel the cool skin of my mum’s arm and tell her I love her and hold her close.

Some of my memories torture me like a time I came straight from work to the care home to see my dad before he had got into bed. I arrive just before 6pm and he called my name, Mya. Mya has always been mum and dad’s nickname for me, dad had the biggest smile on his face, I’d open the curtains and he was so happy to see me. We were talking away for the hour I was there and normally I take a photo of dad and me when I can, when he allows, allowed me to. I keep telling myself I should have captured that moment.
When I told my partner this recently, he said “if I had then I wouldn’t have been present to enjoy the moment in the way that I did”. He’s right. I had many moments with dad and feel so blessed I was able to.

Hello Mum,

/ Maria Thomas / Leave a comment

Hi Mum,

It’s been over ten years since I physically hugged you, spoke to you and saw you. I can still smell your scent when I smell perfumes, Poison or Givenchy. Even the smell of Frankincense reminds me of the essential oils you use to use in our old house.
I see your face, expressions in people that I meet, reminding me that you are still here. I hear the songs you loved and know that you are near.
I still hear your laughter in my head, I still see the red lipstick you wear, the bright colours of dresses and shirts you would wear. Jeans were never part of your wardrobe and I always admired that the colours you wore suited you every time.
I loved that you would ask friends to make your clothes for you, they were unique like you, as were your headscarves. I remember the gold necklaces, earrings, jewellery you wore, you were never scared to wear them. You were fearless in so many ways and adventurous. You will never know how much of me is you.
I remember your dreams and stories were filled with worry and caution. I wish I had known more about your life in Mauritius and what had really brought you here, what were you leaving behind and how easy it was to let go.
Like many a better life for your children, a new dawn and hope for the future, a home to call yours and a family that were solid. I wish I could tell you how I live my life now, how I hope you would be proud of me, seeing me happy and with a very different life you were part of. I struggle Mum, there are so many things I didn’t expect, so many revelations and expectations. I struggle with not hearing your support and compliments, negativity is a bitter pill to digest, there’s so many side effects.

I remember the day after you died, I heard you call my name so loudly as a whisper in my ear so closely that I had to look around. It was the name you called me by, not my given name. And I remember feeling my heart beat so fast like I had had an electric shock.
I know you are here with me every day and when I really need you, I see you in my dreams. The last dream was not too long ago, and I remember us catching up about what has been happening in the world, us laughing together, and when it came to saying goodbye. We hugged several times before we said goodbye. I could smell your scent of Frankincense, feel your cool, soft cheek next to mine and feel the tears rolling down my face.

Until we next meet.

In the grand scheme of things…

/ Maria Thomas / 2 Comments

Well, the last 12 months has been an eye opener of familial life, career, bullying, patterns of life, responsibilities and all the past memories or experiences I have gone through and still go through.

There are some memories I cannot wipe away but manage them on a day to day, month to month basis. Some memories like tonight, where I look at the clock at 12:20am and remember on this New Year’s Eve like every other for the last six years; you are no longer in my life. I cannot celebrate another year with you, go shopping with you, tell you about all the exciting moments in my life or share the partner in my life with you. We are no longer a family unit because the glue that held us together is no longer there.

We may have argued, hurt one another, spoken harsh words but isn’t that what everyone goes through, isn’t that normal? All those memories where I rebelled against your beliefs and wisdom of experience. When I thought I was right and you were wrong, when everything you had been through in life was for our/my benefit, but I couldn’t see through that as a child as a teenager and sometimes as an adult.

I remember many things like your red lipstick, your smile, your infectious laughter. I remember the brightly coloured clothes you wore. I remember you always wore skirts and dresses and dressed well even going shopping. I remember your colourful head scarfs and your Harrods bag that you took with you to work. The tea I would make for you in your flask, the cakes you bought home at 4pm from work as you loved afternoon tea. The family get-togethers at Christmas for afternoon tea at Harrods, it became traditional in our house. Chicken Biriyani, my favourite meal. The birthday parties and the mean cocktail punches everyone got drunk on. The people whose lives you touched and whom loved you dearly. You had a big, generous heart where you gave without a thought to yourself and you welcomed everyone in. I hope this is where my qualities come from, a part of you.

In the grand scheme of things, I suddenly realised “why am I sweating the small stuff, because it’s all small stuff?”. Why have I not lived life to full capacity and how did I become so constrained with how I navigated it. I vowed to myself, I would live each moment with fun, love and an open heart! If situations hurt or pained me then this journey of life is where I need to grow, develop, evolve and I will never stop any of those things. In the grand scheme of things, I’m alive and have every moment to create and be happy in and only I can choose that for my path. So, onwards to the next chapter of life and wherever you are, I love you Mum. You will always be in my heart and soul.